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‘Whisper No More‘ is a learning package that contains stories from Aboriginal people about their experience of cancer. Linked to a decade of research, it was prompted by findings from ‘A whispered sort of stuff‘, a report on a study undertaken with mid-west communities in Western Australia.

‘Whisper No More’ is freely available online for registered users and includes videos, discussion questions and links to key articles and websites. There is also specific content relating to future planning and discussions about end of life care.

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Researchers from the University of Western Australia and the Cognitive Decline Partnership Centre are trying to understand more about how Australian healthcare professionals understand and make judgements on decision-making among people living with dementia.

If you are an Australian health care professional or aged care worker and provide care, services or treatment to people living with dementia as part of your role, you are invited to participate in this short, online survey.

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Researchers from the Cognitive Decline Partnership Centre are releasing a Policy Development Guideline on Supported Decision-Making for aged care providers in Australia. Supported Decision-Making is a rights-based approach aimed at enabling people living with disability to make and/or communicate decisions about their own lives. Supported Decision-Making is promoted within the Convention on the Rights of Persons with Disabilities and the Australian Law Reform Commission’s National Decision-Making Principles. This area is also topical for aged care providers, given current reviews of guardianship legislation in a number of Australian states.

This free seminar will give an overview of the broader research project, and explain the process of guideline development, with tips for implementation in aged care settings.

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A few weeks ago I had the unusual circumstance of attending two events to mark the passing of people in my life, in the same weekend. One was for a family member, and one for a close friend. I have wanted to reflect on how we express ourselves and each other in funeral practices. The events were very different, and having them so close upon each other made the contrast seem quite noticeable. Both expressed the love and loss in touching ways. Below is a short pastiche of images and moments, which I hope will paint a picture.

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The following media release was circulated this morning by Advance Care Planning Australia

National effort to start an important conversation

National Advance Care Planning Week, April 16-22

Health sector leaders from across Australia have joined forces to promote awareness of the inaugural National Advance Care Planning Week, with hosted events across the nation from Kalgoorlie, Western Australia to Cape Barren Island in Tasmania.

Together they are asking Australians of all ages and health to consider who they would like to speak for them if they were too sick to speak for themselves and what health care decisions they would want them to make.

• Dr Will Cairns, Clinical Lead for Queensland’s Strategy for Care at the End of Life

• Ms Liz Callaghan, CEO of Palliative Care Australia

• Dr Craig Sinclair, Research Fellow at the Rural Clinical School of Western Australia

Launching for the first time in Australia and funded by the Australian Government, National Advance Care Planning Week is part of an international public awareness effort, coinciding with significant advance care planning initiatives being held in the USA,Canada and New Zealand.

Minister for Health the Hon. Greg Hunt MP is pleased that this important health initiative is garnering support across Australia and focussing attention on advance care planning – a concept not well understood by the general public, but a critical part of healthy ageing.

“Around half of Australians will not be able to make their own end-of-life medical decisions, yet few people take the active steps required to enable control of their future health care. The week will challenge all Australians to start conversations with loved ones about what living well means to them,” says Minister Greg Hunt.

Dr Karen Detering, Medical Director of Advance Care Planning Australia commented, “the evidence is clear that advance care planning can help alleviate stress for people who find themselves asked to make medical decisions for loved ones in need”.

“Do it for yourself. Do if for your loved ones. And ideally do it when you’re fit and well – don’t leave it to chance on the day you present at the emergency room,” says Dr Detering.

More than 100 community groups and health care organisations across Australia have signed up to host an event as part of the initiative, starting an important conversation in their community about making their future health care preferences known.

People can get involved in National Advance Care Planning Week by hosting or attending an event to raise awareness or by finding out more information about advance care planning.

What is advance care planning?Advance care planning promotes care that is consistent with your goals, values, beliefs and preferences. It prepares you and others to plan for future health care and a time when you may no longer be able to communicate those decisions yourself.

Key facts

· Around half of Australians will not be able to make their own end-of-life medical decisions

· A third of Australians will die before the age of 75

· 85% of people die after a chronic illness, not a sudden event

· Research shows that advance care planning can reduce anxiety, depression and stress experienced by families and that they are more likely to be satisfied with their loved one’s care.

About Advance Care Planning AustraliaAdvance Care Planning Australia (ACPA) is a national program funded by the Australian Government Department of Health, enabling Australians to make the best choices for their life and health care.

We believe advance care planning is a heartfelt conversation and a personal statement that goes way beyond filling in a form. It’s a commitment to honour and respect an individual’s values and choices. We want to enable every Australian to make the best choices for their life and health care, based on their personal values and beliefs.

They include links for people who are interested in contributing to the national week, by hosting or attending an event. What would you do? A movie night? Barbeque? Seminar? Drinks with folks from your sports club? Book club meeting? We’re all encouraged to get creative and use the hashtag #acpweek18 to share the love on social media. Of course you’ll be welcome to share it here with us too. Feel free to leave a comment to let others know what you’re planning (no pun intended).

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So the last few days has been interesting for me. As GoGently Australia launched their latest campaign to advocate for assisted dying legislation, I’ve been removed from the public response in Australia, while attending the ICEL conference in Halifax. It’s been a great chance to hear about recent developments in Canada, and reflect on the data and some of the ‘lived experiences’ of practitioners, family members and patients, which has emerged through recent research.

We at Palliverse support open dialogue between researchers, clinicians, policy-makers and the broader community as to how things are going and what are the priority areas for future work. Please see below a research opportunity which is relevant to researchers and clinicians working in Australian adult palliative care settings. Continue reading →

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It’s well known that research can be a demanding and sometimes lonely road, particularly for those new to the discipline. Early career researchers often have to build networks, lead projects, write applications to funders and ethics committees, liaise with project stakeholders, analyse data and present findings, all while building networks and managing a precarious career pathway with little security. Support and skill-sharing is critical during this process. The Palliverse researcher hub was formed in 2016, following a discussion between some of our crew at a conference. The idea was a regular, informal get-together for post-grad and early career palliative care researchers, to discuss aspects of our projects, seek advice and share experiences. We meet bi-monthly for around an hour, and keep a relatively open agenda, to aim for the kind of reflective discussion you don’t always get at departmental seminars or CPD sessions. We’ve started small, and now are ready to branch out a little. If you are a palliative care researcher working in Australia or New Zealand, and think you’d like to join our group, please get in touch with us by emailing craig.sinclair@uwa.edu.au. Happy researching!